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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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This shows how doctors who mistake CFS for Hypochondriasis without a serious CFS medical evaluation lack the critical thinking skills to be a physician. There may be a few similarities but look at the differences. False beliefs do not produce CFS biomarkers such as HPA levels off, bad liver detox profiles, low NK function, lesions in the brain, failing a stress test, etc. False beliefs do not create the extreme fatigue unrelieved by rest. The differential diagnosis is simple, test the patient for a few of the many known CFS biomarkers.
That would be a good plan, Kurt, but the UK doctors believe that giving people tests will just make them think they might have a physical disease so you don't do any. I think they were reluctant to do even the most basic ones but were forced to do some. One TV programme an ME "expert" spoke about doctors who colluded with patients and made them much sicker by doing tests.
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XMRV awards you instant respect. Respect you always deserved but never got. People who never talk to you as 'they had a cousin like you too' (who of course is 'cured) now talk to you. By signing up to 'team CFS' because you never had anything else, you maintain yourself at the bottom of the little league. The thing is, you never wanted to be in a league, you're sick and you just wanted to know what on earth was going wrong with you - now you can have a go at finding out. Leave the team and start a new life outside of a group of people who appear to be like you, who are like you, who are not like you. Find yourself. Remember you are Tony or Jill and you're just infected that is it. You aren't a PWC. That brand got you nowhere.
XMRV is in the UK and it's real and it's infectious and you can get a blood test done NOW in the USA from VIPdx. An XMRV culture test, gold standard, un-arguable proof. That's all you need. A little piece of paper. Not a fully referenced Harvard argument - like I used to produce days ago for the last 18+ years. My way to academically compete with the denialists. That's all over.
How can your disease not be XMRV if severely disabled by 'unexpalained' neuro immune disease? How can you have the disability of someone with COPD/MS or heart failure whilst testing negative for everything - yet you get out paced by a 95yr old and you're 30. How can you have a 'normal' blood work up at the doctor's but you are too short of breath to walk up the staircase, never mind walk to the mailbox? XMRV is why. Chronic viral infection is why. Blown ATP/Mitochondrial function is why. No blood in your brain, is why. Broken brain networks that cause Dysautonomia is why. Who else has a life like this, like you? No one. How strange. Not strange if you have an infection that pole-axes you.
A blood test (culture) is all you need. I'd get one if I was very sick, so I did just that and it's positive. And that my friends, is the Wessely Schools ultimate nightmare. So go ahead and create it for them, by getting tested in the next 6 months, not 2 years. You'll go from a pariah of society, a disbelieved 'joke' who needs CBT and Graded Exercise to someone seriously sick - that you were anyway. You just never had any proof. Now proof is available from the USA. Don't forget that. Haul yourself out of your trench and lay on your back, and take a deep breath. The realisation you've all been 'had' by a political conspiracy for the last two decades is not a nice one, but it's one that needs to be realised if you suffer from neuro immune disease that is 'unexplained'. WPI just gave us a translation manual - and now all is clear.
Lastly, remember also to toss aside the 'group' mentality of proof. You don't need your neighbour to drive a red car, to make your red car - real. Similarly, you don't need anyone else in the entire world to test positive for XMRV if they have the label CFS, bongowongoland, or ME. What matters, is that YOU have it. Not 67% of people or 0.0000000% of people , but you.. So when studies like the IC, or anyone else cannot 'find' XMRV (as will happen), then ignore it. This life is about you, no one else.
Exhilarating!
BRAVO DysautonomiaXMRV!
Upon reflection, the only comment I might add is that in general in the UK, my summary researching forays into the private and public funding related to ME/CFS research revealed the subject to be labyrinthine and complex. Transparency is at a minimum, and it is difficult to establish (or refute) definite financial connections to individual CFS researchers and private industry. Here's hoping for better days in the future for ME/CFS patients and thier loved ones in the UK.
For those interested, I have received word from PLoSONE editors regarding Professor Simon Wessely and the issue of declaration of competing interests related to the recently published IC study in their publication. In summation, they found that the issues I was able to raise were not sufficiently adverse to the article in terms of any possible bias. .
Call me an idealist :Retro smile: ...
For those interested, I have received word from PLoSONE editors regarding Professor Simon Wessely and the issue of declaration of competing interests related to the recently published IC study in their publication. In summation, they found that the issues I was able to raise were not sufficiently adverse to the article in terms of any possible bias. The specific conflicts which I could document were deemed less than the level needed by the PLoSONE editorial board to retract the article or require an addendum declaring competing interests. The publisher is to be commended for all efforts to professionally investigate and decide the matter. Time to move on.